Forum

Coming to Terms

So I was diagnosed with HSP aged 18 and at 21 I was told I have MS as well. I’m now 27, but don’t think I’ve come to terms with being disabled yet.
I have great support around me, and feel selfish for getting so down all the time. Every now and again, I feel so sad and frustrated that I can’t do anything that I want to. Like I say, I’ve been living with this for 9 years, but feel that I need to know…will it ever get better? Or easier???

Hi

Unfortunately no one knows the answers to your questions, unless they happen to be blessed with the ability to tell the future.

However, there is every reason to be optimistic about the future. Huge advances are being made in the treatment and understanding of MS. I don’t know a lot about HSP, but I would imagine that that is the case for it too.

I do think that both diseases will at least be brought under control before long and at your age the future will be very different to what it was for someone 20 years ago.

What does come to terms mean? I suspect it means different things to different people. It might mean learning to live with, which I suspect you have done.

Good Luck!

Anne

Thanks your reply Anne.

I do try to be optimistic about things, it’s as though every now and again the tears come along as though they’re telling me that I’m just using the optimism to hide my true feelings.

I know that there is a lot of research into MS, but HSP i very rare, so there’s less on that front.

The main problem is the boredom, I think, as there’s not much I can do for myself, I find is so frustrating to just be and not do, lol.

Sorry for sounding miserable, lol, just needed some support from people in similar situation.

Sarah x

hey! Your post riveted me to the spot! I began with dropped foot mobility problems way back when I was 45…I am 62 now.

I had many tests over the years and was given a 95% diagnosis of PPMS. But no test ever proved it, but I presented as that.

In 2010 my 15th neuro said it wasnt MS but HSP!!! Yeh!!! A year later that was reverted to PPMS, only for it to be finally fixed back to HSP the following year.

Thing is we have no-one in my family with similar symptoms…but I was brought up by my step dad and know nowt about the birth familys side....cant go there now.

So for you to be diagnosed with both MS and HSP is a helluva double wammy…as you know hun.

I wonder if you`d like to become buddies and we could correspond more and compare notes.

I`ve had 17 years to come to terms with my disability and would love to try to support you.

much love Pollyxx

Hi Polly, I don’t think you remember me but we spoke a couple of years ago on here :slight_smile: x

sent you a pm…looks like we are already buddies…we must resume…

pollxx

Just found our chats from 2013…cant remember them really…but never fret…we`re here again.

polly

ps waiting to hear from you in pms.

xxx

Hi again

It’s not surprising that the tears come along. You have a lot to deal with. Would counselling help? Your GP or MS nurse (if you have one) can refer you.

Would you consider going to a MS Society Centre or MS Therapy Centre, both could provide social contact in addition to other therapies, should you want them.

There are no easy answers but there is support out there. The MS Society Helpline (number at the bottom of this page) might also be worth a ring.

Anne

I go to a local centre, that was originally for people with MS but they now help people with all neurological conditions. I’ve been going there for 3 years and it does help but I still find it tough.

I had counselling when I was first diagnosed with the MS.

Thanks for helping :slight_smile: x

Sarah,

I’m not surprised that you sometimes feel down. I think there would be something greater wrong with you if you didn’t feel down after having to deal with the diagnoses so young.

i was very sporty, had my first attack at 33, bounced back completely from this, then at 39, the MS came back with a vengeance and has been firmly in charge since then. That was 12 years ago. I dealt with the MS badly and was basically a grumpy git for a couple of years.

I think time lets you deal with these things better, although I still have my moments of doom and gloom. I still get peed off now and then that I can’t play golf anymore or tennis or run but then on my brighter days I think ho-hum, let’s get on with it. So over time, I think you’ll learn deal with it better as you get older. It’s not easy though at a young age (you’re young compared to me) to deal with everything you’ve been through.

all the best.

derek

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Hi Derek,

Thanks for your message. It most definitely makes me feel better to hear that I’m normal to feel that way, and I’m not just losing the plot.

I know how you feel, I was very much into dance and fitness, and it is extremely frustrating to not be able to do them now.

You were young yourself on diagnosis, it really is comforting to hear that time makes things better. Thanks again.

Sarah x

how is MS something that one can ‘come to terms with’, when the ‘terms’ are always changing?

as bad the symptoms can be, the true cruelty for all of us, irrespective of our personal affliction, is the uncertainty.

if only we were given a list of ailments and told “that’s your lot”, then some kind of confident forward thinking could cement itself. but we don’t have that.

even the DMDs that we are told are vital to our future health and success, are marketed to us citing a range of percentages. there are no certainties, no definitives, no clear cut, scientific precisions, no guarantees.

we all share a common burden of uncertainty, but this also runs across the entire species of self aware humanoids. because of this, no one is immune to sadness and other negative emotions.

There are plenty of pissed off people out there who do not have MS. The OP of this thread does and yet they feel bad about feeling glum about it? We all have at least one more reason than most other people, to have a damn good whine. And so i say “have it! and make it a bloody good one! especially… if it makes you feel better.”

indulging the things you KNOW make you feel better, are the only certain set of terms we are allowed to have. so have them!

good luck to you and if you need to scream, then scream the farking house down :slight_smile:

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Please dont tell me im going to be a grumpy git for 2 years ! but i love the ho hum attitude, im trying with that one.

I was diagnosed 3 months ago and its a living hell cant get to grips with it at all. I dont really understand MS as it was a complete shock. Doctors/nurses say every symptom i have “isnt the ms” but no further support.

Should be starting meds soon.

Please dont tell me im going to be a grumpy git for 2 years ! but i love the ho hum attitude, im trying with that one.

I was diagnosed 3 months ago and its a living hell cant get to grips with it at all. I dont really understand MS as it was a complete shock. Doctors/nurses say every symptom i have “isnt the ms” but no further support.

Should be starting meds soon.

Hi,

Sorry to hear your diagnosis hun, I doubt you’ll become ‘a grumpy git’ lol, but there will be times where you feel down and angry, but as people are telling me, we all just have to have a ‘ho hum’ attitude and enjoy life to the best of our abilities.

Take care x

This reply literally made me laugh out loud. You’re so right, thank you. And next time I feel that way I will ‘scream the farking house down!’ Hehe

Sarah x

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I cried the farking house down this morning.

Problems hitting me and building up into a very difficult wall to break through.

I wont bore you with too much about them .

Had a massive cry and now I will work out how to fix those problems, one at a time.

Boudica fights on…but it`s not so easy today!

pollxx

its the shitty days which give the good days their value.

stay chipper!

lots of red-headed warrior type hugs for you Poll xxxxxxxxxxxxxxxxxxxxxx

Hi - Love it when Poli replies to posts. This is one very determined lady.

Just space yourself, give yourself some selfish down and relax time before going for a biggie. You will learn how to relax and be selfish to re-charge your batteries for the next big day out. So it may not be a biggie for anyone normal, It may only be a coffee or quick lunch with mates, a trip to the library or even the C.A.B. But plan your outings, make sure that you are well rested, and smile, be happy that you are out and about with other humans, don’t bitch, just stick a smile on your face and pretend a bit. You hopefully will come to believe that on the days you really tried, you felt good about yourself and had a good day.

O.K. so sounds a bit cheesy, but if you try it out, promise you will feel good about yourself and the effort you made.

Lots of hugs & support - Mary x